Thanks,
@btdt , for providing the link to the article by Doctor Mark Donohoe. In addition to the respect and trust expressed towards patients regarding their lived experience with multiple chemical sensitivity (and also what he referred to as chronic fatigue syndrome), some of the content shows an understanding of these conditions that is quite remarkable, especially considering the article was written approximately 20 years ago. Here are a few excerpts:
"These tests, in total, suggested two things to me. Well, three things really. Firstly,
we were not dealing with an homogenous, single disease entity. More likely,
these people represented a group of disorders with common symptomatology, much as we had found in the closely related chronic fatigue syndrome.
Secondly,
if one were not careful to divide this group up into appropriate sub-groups with common defining characteristics, the statistical assessment of the group would . . . fail to find real differences between these people and the “normal” population.
Thirdly, and for me most importantly, it suggested that
we were finding stable states of health (or ill health) which were not subject to homoeostasis, or a return to “normal” function, any longer. I say this because the peculiarly individual “abnormalities” remained surprisingly constant over months or years, and had all the hallmarks of a stable adapted response.
Whatever the original injury and damage, the expected recovery did not happen. . . . The temperature lowered into
a state of mild hibernation, minimising physical demands of a system under stress. The person was not well, but was not as ill as they may otherwise have been. More importantly, they were not about to “recover” if recovery increased damage and shortened life."
"I learned that day that explanations based on indefinable (and essentially unprovable) psychological explanations are frequently our first answer, but are rarely our best."
"Specialists spend much of their time either squeezing hexagonal pegs into round holes, or finding no problems where clearly problems exist. Both these approaches cause immense problems for those with novel,
challenging or emerging illnesses. In the “hexagonal peg” scenario, the problem is reduced to one which fits with the specialist’s training or interest. Failing to see the bloody obvious is less dangerous, unless the specialist is to give a report to a lawyer or insurer! Each approach can lead to gross errors, occasionally
flirting with scientific fraud."
"Where causes are not easily found, we invent causes. . . . They need to make the majority of us comfortable that the causes do not apply to us. We need . . . a type of rubbish bin for medicine, where we dump the conditions and people who we either do not understand, or who make us uncomfortable. Psychology and psychiatry will do for now. These are pernicious bastard children of medicine. Ever ready with an explanation which fits the needs of the medical model, there is no escape for the people trapped in their prejudices."
I could continue quoting this excellent article, with content suitable for various threads. For example, the intervention of government and police in cases of parents trying to protect a child from the harm of chemical exposure -- similar to the recent BBC radio segment on parents of children with ME. I haven't finished yet, but consider the article well worth reading.